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The Specialist Advisers offer 'lileline' support to Tuberous Sclerosis families. 'Helping children with tumours' - symptoms of TSC may be tumours in any organ of the body, epilepsy, severe learning disability, autism & challenging behaviour.
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Beneficiaries
Situation
TSA Community Project - funding for our 4 Specialist Advisers (Family Care Workers). Two posts commenced Feb 2001, a third Feb 2004, and a new post May 2007. They cover the whole of the UK between them. Their job involves supporting individuals with TS, their families and carers in dealing with the wide variety of problems resulting from this multi-faceted and seriously handicapping condition. Early intervention is essential to save lives and give the best quality of life. Sadly, symptoms relating to brain or kidney tumours, or difficult epilepsy may be overlooked without optimum family support and children may, and do, die unnecessarily. The Specialist Adviser has four main areas of invelvement: medical and health, education, benefits and social care. For the first three years two Advisers were mainly funded by the Community Fund and part funded by the TSA. The Community Fund grant ceased at the end of 2003. The third post was partly funded by the Rank Foundation, Foyle Foundation and D'Oyly Carte Charitable Trust. This funding has now ceased which leaves us with a shortfall of: £218,355 over 3 years (£72,785 per annum)